Consensus was: safety is improving – from 2011 the mortality rate has been 0.3% rather than 1-2%. Due to impressive rates of NEDA ( no evidence of disease activity – relapses or on MRI) – 80% at 2 years and 70% at 4 years in one study;

Yes, but ONLY in cases of early/new, highly active/aggressive relapsing remitting MS, where person is young, still walking, and treatment with first & second line treatment have failed.

And now for something completely different, and please DO try this at home(!): Seriously, I will be

This beautifully carried out RCT had people with progressive forms of MS taking 1,200mg of Lipoic Acid, a supplement often sold as an ‘anti-oxidant’, and also called ‘alpha-lipoic acid’ once a day. A control group took a placebo.

After 2 years, the group taking the lipoic acid had a whopping 66% less brain atrophy on MRI scan ( showing less loss of brain cells), taking them back to a normal rate of brain atrophy, and half the number of falls.

Love it when something so harmless is investigated properly and found effective. Especially good to have something positive for progressive MS!

showed that as we know, effectiveness in reducing relapses from lowest up goes: Interferons, then Fingolimod, then Alemtuzemab and Tysabri. The last 2 showed the same effectiveness in preventing relapses. Natalizumab also showed improvement in disability in the first year, but not after that. and as we now the side effect profile and the way you take it is very different. Tysabri also has a rebound effect if and when you stop taking it.

Alemtuzemab

research was presented that showed this drug performing very well in ‘resetting’ the immune system. Around 60% of people did not need more than 2 infusions, and NEDA ( no evidence of disease activity) was very high., but only when used EARLY. Time to change from the ‘wait and see’ attitude? This is the push from leading MS experts. Maybe check in with the MS Brain Health campaign if your neurologist is dragging their feet.

Vitamin D

very strong evidence coming through from numerous sources that notwithstanding previous medical controversies and uncertainties, all people with MS should be on high dose from diagnosis – 4-5000 IU daily at least, and testing ( backs up info already posted on this blog) MS Base ( a database with over 41,000 people with MS’s records) showed a clear seasonal peak in relapses around the world, at the end of winter; with a time lag, shorter in colder countries. Low vitamin D levels were the strongest risk for progression in another study, and added a further anti inflammatory effect to people already on a disease modifying treatment, in another.

One study found that people with MS given 100,000 twice a month for 2 years had a 60% reduction in relapse rate, and a 78% reduction in new lesions, compared to placebo. Powerful stuff, hopefully enough to finally swing the doubters.

Siponimod for progressive MS

presented as promising new treatment but I missed that session so – investigate!

Scientific highlights presentation – was split into 3 sections ‘migration and CNS injury’, ‘Gut and Food’ and ‘remyelination and oligodendracytes’

At the end of the event, I was really surprised to see these slides in the highlights – I missed the full presentation but one slide went like this:

Went on to describe how animals with this experimental model of MS respond very well to hyperbaric oxygen: Oxygen therapy reduces pattern 3 demyelination.

So maybe we will see some new research showing usefulness of hyperbaric oxygen? If you can access it, I always say that it’s worth trying, and observe the effects on yourself.

Diet and Gut in MS

Feels like finally, the importance of aspects of diet is being addressed and listened to in MS research. In fact all present were enjoined Not to ignore environmental factors. Hurrah! a strike for logical thinking!

This was a feature of quite a lot of research at ECTRIMS. Lots of research on the role of the Biome ( bacteria in the gut) and how it affects MS. Interesting, exciting, but we still haven’t nailed practical application yet, so best bet is Take a daily probiotic capsule or powder, with as many different strains in as possible. And do these things, discussed previously.

Being overweight was identified as a serious risk factor for both developing, and worsening with MS. If you’ve got pounds to lose, check out the excellent ‘Fast Diet/ 5:2 diet’, showcased by Micheal Moseley on the BBC -https://thefastdiet.co.uk/ fasting also has benefits for inflammatory conditions.

Salt:

salt stored in the skin was posed as a driver for auto-immune neuroinflammation in one paper. People with MS were found to have higher levels of salt in the skin….so that too… we could all cut down our salt – most is found in processed foods… and as you do it, your tastebuds acclimatise so it won’t mean you won’t taste your food.

Ending on a high

Conference ended on a high note, celebrating the huge progress that has been made in preventing disability – progress that started even before the availability of the disease modifying drugs, but has in recent years added a further 15 years of non-disabled life to the average MS-er, and is still making leaps and bounds.

I hope I’ve made an accurate summary of the sessions that I attended – mistakes are possible, and they will be all mine. If you spot one, please let me know!

It’s another ‘lazy’ blog, re-blogging a great piece called ‘How to stop attacking yourself. 9 steps to heal automimmune disease’ by Dr. Mark Hyman. Brings together a lot of familiar themes; the gut, leaky gut and how to heal it, food intolerances, and calming inflammation.

DOINGNOTHING IS NOT AN OPTION!! MS can have a very serious impact on your future quality of life. All measures you can take to stay well, have the most impact when they are done early on, and stuck to consistently. Nobody knows what causes MS. As far as the disease process goes, It’s widely believed that the early inflammation causes damage, which causes later degeneration, but we now know that degeneration is also a factor right from the start. However, there is a lot you can do to combat both inflammation and degeneration, both with medical treatment and your lifestyle & nutrition.Having worked as an MS specialist nurse for about 13 years now, here’s what I’d do if I got a diagnosis of MS:

1) ADRESS INFLAMMATION & DEGENERATION WITH DIET &LIFESTYLE. Get George Jelinek’s book ,’Overcoming MS’ and follow all the dietary and lifestyle recommendations to the letter. I consider this to be a rock solid foundation for good health, whether you have MS or not, and essential for people with MS. It’s also so great to keep hearing individuals stories of improvement, even with long-standing and progressive MS, following this approach, and both Jelinek’s, and more and more research on diet and disease backs up this evidence based approach. See www.overcomingms.org

2) Some – not all – but some, people with otherwise unexplained medical conditions, have an underlying food intolerance, and you can be completely unaware of the problem. If you do have an intolerance, for example, to gluten, then every time you eat that food, you set up a chain of inflammation in the body, which can certainly exacerbate any auto immune condition. For that reason, I, personally, would also want to identify food intolerances. Finger prick blood tests are available online from companies like York labs and Lorisian. However, there’s a lot of controversy about them, and they have been found sometimes to be unreliable, with a tendency to just show up with whatever you’ve eaten recently. A more reliable way is to spend some weeks doing s ‘exclusion diet’, to see if you can find any cuplprits. Here’s one example: https://avivaromm.com/elimination-diet/ . We know that MS is a conditions with ups and downs anyway, and an exclusion diet is an effort, so both approaches have their pros and cons, but in my experience, when people who have a food intolerance identify and avoid that food, they get a lot better all round, so its worth doing.

If you do identify food intolerance, you need to also learn about gut health, and start building yours up by using a plant based diet and things like probiotics, more on that another time, then, hopefully, your exclusions don’t have to be forever.

3)Find out about your options re drugs. I am not going to be talking about diseases modifying treatment (‘DMT’) choices here, only broad concepts.

MS drugs aim to stop or reduce inflammation, manifested as relapses, in the hope that this will prevent the degeneration. See the infographic in my Alemtuzimab about the relationship between safety and efficiency of the various treatments available.

An important point to consider is that some of these more effective drugs are ‘second line’ treatments, which means they are only available to you on the NHS if you have already tried the standard drugs. There are also sometimes drug trials recruiting, where you can access a drug as part of an experimental trial. (see other posts) There is a link on the MS Society website to find out what trials are ongoing and how to get involved in a trial.

MS drug treatment is a fast changing topic and you need to have a serious discussion with your MS Nurse and/or neurologist to find out what you are eligible for, and then read round the subject and discuss to make an informed choice.

Make sure the information you use to make your decision is as objective as possible, and not coming directly from the companies making the drug. www.msdecisions.org is a decision making tool that’s been put together by the MS Trust, the MS Society, the UK MS Specialist Nurses Association and the Department of Health, so its’ as objective as you are likely to find.

Last important point: The earlier in the disease process that a drug is used, the more effective it is likely to be.

4) Consider a clear out. Environmental factors combining with genetic susceptibility is what is thought to trigger MS , and as we are still unsure exactly what those environmental factors are, there is still a lot of interest and research going on into the role of viruses etc in MS. Even if this turns out to have nothing to do with the cause of MS, any inflammatory condition will be worsened by an overload of any organisms that should not be there, whether they are yeasts, bacteria, virus, or parasites. People who are concerned that they may have an overgrowth of yeast, wrong gut bacteria, etc may want have a ‘clear out’ by doing a 3 month ‘detox’ with a strong natural detox agent. I like something called SOS-Advance, which is a colloidal suspension of strong anti bacterial, anti viral, anti parasitic plant oils like oregano, neem etc, but there are plenty of other herbal ‘de-tox’ products. Be aware, before starting any detox product, that it’s possible to feel really grotty for up to a week at first, if you have a ‘die-off’ reaction. If this happens, drink more water, rest, make your diet light and fresh, treat any constipation, and shower/bathe frequently.

5) Eat Really good Food – it’s not all about avoiding stuff- food has so much power to affect the cells of our bodies for brain and nervous system health, so read up on a wholesome plant based diet, and ‘eat the rainbow’, especially dark green leafy veg.

6) Becoming more resilient to stress. Super important. We know that unmanaged stress causes and inflammatory cascade in the body, and there’s enough research to identify it, along with infection, as a trigger for MS relapses. There’s load of research now on the power of meditation, mindfulness, and relaxation. Personally, and especially if you struggle to fit meditation or deep relaxation into your day, I like the HeartMath technique, where you learn to synchronise your heart rate variability, and get feedback as to how you’re doing. In my clinics, I use the desktop teaching program, and send people away with the simple technique to do regularly, but you can now purchase an app version, available from itunes: https://store.heartmath.com/innerbalance

7)Read up on intermittent fasting, even if it’s just to use if and when you’re aware that you have inflammation or relapse going on.

So, TO SUMMARISE, and adding the Jelinek/Overcomingms recommendations:

Vitamin controversy is not such a controversy if you ask the experts. #MSBlog #MSResearch“Some of you may have seen the BBC news from last week that covered the meta-analysis below. The press release and article is worth reading. They both question the health benefits of vD supplements and clinical outcome for a host of diseases including MS.”

“The difference between so called observational and intervention studies suggests that low vD levels are a marker of ill health, in our case MS. According this hypothesis inflammatory processes involved in pre-symptomatic MS and the clinical course of MS would reduce vD levels, which would then explain why low vD status is associated with MS. I have a problem with these conclusions regarding MS as they ignore the strong epidemiological data linking vD and/or sunshine to MS, for example latitude, migration studies, month of birth effect, parent-of-origin effects, difference in MS concordance rates between non-identical twins and siblings.”

“As I am not a vD expert I asked Bruce Hollis, one of the world’s preeminent vD experts for an opinion. This is what Bruce said:

The abstract from Bruce Hollis’ review is below. He is simply making the point if you review a large number of studies that use the incorrect dose and dosing schedules of vD you get a result that suggest vD supplementation does not make a difference. In other words if you put crap in you get crap out. What Bruce and his colleagues are suggesting is that we need to properly designed vD intervention studies with adequate vD supplementation schedules that essentially keep your blood vD levels above 100 nmol/L all year round. Why this level? If you study populations that still live a hunter-gather existence in Africa, or people who work outdoor such as farmers and lifeguards, they all have blood levels above 100nmol/L.”

“Therefore this meta-analysis does not change our advice regarding levels of vD supplementation. We still support the vD Council’s recommendations of 5,000U of vD3 per day.”

Conversion units of vD:

40U = 1μg

400U = 10μg

600U = 15μg

2,000U = 50μg

5,000U = 125μg

10,000U = 250μg

This blogs recommendations for levels of vD supplementation:

Children less than 2 yrs of age: 600U per day

Children 2-10 years of age: 2,000U per day

Children above 10 years of age: 5,000U per day

Adults: 5,000U per day

Pregnant woman: 10,000U per day

“Please note that this is an average recommendation and some people may need more than this and other less than this to maintain a blood level between 100 and 200 nmol/L. In an ideal world you would start vD supplementation at this level and after 6-8 weeks you would have your levels checked and adjusted accordingly. There are many factors that control blood levels in an individual apart from the dose of vD. It is also important to note that you should not be taking any calcium supplements with vD. Calcium supplements are only necessary for bone health or if you have thin bones.”

Background: Low serum concentrations of 25-hydroxyvitamin D (25[OH]D) have been associated with many non-skeletal disorders. However, whether low 25(OH)D is the cause or result of ill health is not known.

Results: High 25(OH)D concentrations were not associated with a lower risk of cancer, except colorectal cancer. Results from intervention studies did not show an effect of vitamin D supplementation on disease occurrence, including colorectal cancer. In 34 intervention studies including 2805 individuals with mean 25(OH)D concentration lower than 50 nmol/L at baseline supplementation with 50 μg per day or more did not show better results. Supplementation in elderly people (mainly women) with 20 μg vitamin D per day seemed to slightly reduce all-cause mortality.

Context: There is no doubt that vitamin D must be activated to the hormonal form 1,25-dihydroxyvitamin D to achieve full biological activity or that many tissues participate in this activation process-be it endocrine or autocrine. We believe that not only is 25-hydroxyvitamin D important to tissue delivery for this activation process, but also that intact vitamin D has a pivotal role in this process.

Objective: In this review, evidence on the vitamin D endocrine/autocrine system is presented and discussed in relation to vitamin D-binding protein affinity, circulating half-lives, and enzymatic transformations of vitamin D metabolites, and how these affect biological action in any given tissue.

Conclusions: Circulating vitamin D, the parent compound, likely plays an important physiological role with respect to the vitamin D endocrine/autocrine system, as a substrate in many tissues, not originally thought to be important. Based on emerging data from the laboratory, clinical trials, and data on circulating 25-hydroxyvitamin D amassed during many decades, it is likely that for the optimal functioning of these systems, significant vitamin D should be available on a daily basis to ensure stable circulating concentrations, implying that variation in vitamin D dosing schedules could have profound effects on the outcomes of clinical trials because of the short circulating half-life of intact vitamin D.

Pharmacologic targeting of T helper (TH) cell trafficking poses an attractive opportunity for amelioration of autoimmune diseases such as multiple sclerosis (MS). MS risk is associated with vitamin D deficiency, and its bioactive form, 1,25-dihydroxyvitamin D3 [1,25(OH)2D3], has been shown to prevent experimental autoimmune encephalomyelitis, a mouse model of MS, via an incompletely understood mechanism. Herein, we systematically examined 1,25(OH)2D3 effects on TH cells during their migration from the lymph nodes to the CNS. Our data demonstrate that myelin-reactive TH cells are successfully generated in the presence of 1,25(OH)2D3, secrete proinflammatory cytokines, and do not preferentially differentiate into suppressor T cells. These cells are able to leave the lymph node, enter the peripheral circulation, and migrate to the s.c. immunization sites. However, TH cells from 1,25(OH)2D3-treated mice are unable to enter the CNS parenchyma but are instead maintained in the periphery. Upon treatment cessation, mice rapidly develop experimental autoimmune encephalomyelitis, demonstrating that 1,25(OH)2D3 prevents the disease only temporarily likely by halting TH cell migration into the CNS.

We have had a topsy turvy week in the world of media and vitamin D. Last week the media was saying it is all a load of tosh following studies in non-MS cases published in the Lancet questioning whether vitamin D is all a myth and that vitamin D had marginal effect on autoimmunity in humans and this week it is the bees knees. Is there any wonder why we do not really know what is going on.

Vitamin D is vital for bone health and can influence immune function and is made in humans following sun exposure. This study was in mice, furry animals who prefer to live in the dark. In this study they gave lots of vitamin D and it stops the development of EAE.

That EAE returns after you stop delivering drug is no big shakes and should be expected to happen.

If you have a decent disease induction protocol (as the antigen depot is there) and the natural regulation that occurs with disease development has not been generated, then disease comes back after a few days or weeks following stopping drug treatment. Unfortunately, this can come as a shock to the people not experienced in the world of EAE. This has led to cancelled clinical trial because of the risk of MS rebound.

This happens with Tysabri and other drugs in MS too

A logical extreme extension of this idea is that vitamin D works in a way similar to Tysabr to block white cells getting in the brain. So it there evidence that sunshine causes PML? (The brain disease that can occur due to stopping white blood cells getting into the CNS)……….Well No.

So the treatment effect is not going to be in the same league as Tysabri. However, to take another extreme with high dose statins we showed that they could inhibit EAE development and could block migration of cells through brain blood vessels because it could inhibit rearrangement of their cellular skeleton. Within two days of stopping drug disease returned (See D below). So what happened in MS? Despite some influence on lesion load in a few studies in MS as shown in EAE studies….the clinical effect has yet to be shown to be earth shattering at the doses used as found in a few studies. So we can go from something ace to it being a damp squib.

In the study they find apparently that it works by blocking a chemokine receptor called CXCR3 (CD182) is reduced, which is a molecule a bit like a stamp that helps it find the brain postcode (ZIP code) by being attracted to molecules that can be produced in MS lesions. Now, what happens in mice were CXCR3 has been removed, well maybe not a lot in some people’s hands and EAE can develop just fine in the absence of CXCR3 following inhibition.

This study suggests that vitamin D works by stopping white blood cells from entering the brain because it reduces a homing receptor. If this is the actual case if should be easy to test. Giving vitamin D to cells in the test tube in humans suggests that there may be an immune modulatory effect, so not quite the same as found in this mouse study. However, you could for example take bloods from any Northern European/American in winter (who will be vitamin D deficient, particularly if they are non-VD supplementing non-whites) show the cells migrate in test-tube assays, now give the person vitamin D to make them vitamin D replete and you should see a major change.

Will it be incremental or Earth shattering?

If vitamin D had such a dramatic impact, there are enough MSers now supplementing with vitamin D for MSers to see a dramatic impact. I personally think that neutriceuticals will have incremental effects, because otherwise they would also come with big side-effects. You may need pharmaceuticals to have major impact. ProfG may think otherwise.

The suggestions that Vitamin D is a risk factor are clear but it maybe has more practical impact in determining whether you will get MS.

Therefore, we should all be ensuring are children are vitamin D replete. This is to my mind where studies should focus. I will be surprised if some clinical trials ongoing will provide useful answers but we will see.

So another bit of Vitamin D in the media last week was questioning whether vitamin D was influencing autoimmunity (in diabetes) in humans. But if you are not doing the right studies are you going to get a useful answer?

You need to ensure you have good bone health to deal with falls and if it limits autoimmunity this is a plus point.

Like this:

One of my clients with MS forwarded me this email from his dad. It’s really nice, and I have permission to share it ( and then I replied) Thanks XXXXXX and ‘Dad’ !

Dear XXXXXXX,

There are two significant surveys reported today. They should give you some comfort that the changes to diet you took aboard a year ago were absolutely the right thing to do.

The first one about processed meat is from a massive study over a long period of time. Although it is not directly about MS it is a reminder of the other significant risks you have significantly reduced as a result of your diet changes. There is one figure that jumps out – people with very differing diets had a 44% different chances of dying over a thirteen year period.

While this study lent massive support to the ever growing consensus on healthy eating, the second report about salt intake is specifically relevant to MS. It appears to be a significant study which seems to being well received as providing a new insight into the triggers for the disease. It also seems to reinforce the part that the microbiome might play in MS (I think I sent you an Economist article on this topic but if not I will dig it out). Although as always there is a long way to go before it can all be validated, and will not cure MS it seems reasonable to hope that it may moderate it. The author of the report says quite clearly in his final sentence:

“If I had MS, I would think very much about not eating processed foods and really cutting down my salt intake,”

It may give you some encouragement, that you have inadvertently been doing this in following your new diet. Although it is not yet proven, it is one of those low cost, low risk, high potential gain actions that are worth a punt.

Love

Dad

(This guy has taken on the OMS dietary approach. here’s my reply)

Hello!

Nice to read such an articulate email! I did read the meat one, but hadn’t seen the salt!

Another biggy ( huge, really) is The China Study – copied here from wikipedia:The China Study (2005) is a book by T. Colin Campbell, Jacob Gould Schurman Professor Emeritus of Nutritional Biochemistry at Cornell University, and his son Thomas M. Campbell II, a physician. It examines the relationship between the consumption of animal products and a variety of chronic illnesses, such as coronary heart disease, diabetes, and cancers of the breast, prostate and bowel.[2] The book had sold 750,000 copies as of January 2013.[3] It is one of America’s best-selling books about nutrition.[4]

…The authors conclude that people who eat a plant-based/vegan diet—avoiding animal products such as beef, pork, poultry, fish, eggs, cheese, and milk, and reducing their intake of processed foods and refined carbohydrates—will escape, reduce or reverse the development of chronic diseases. They also recommend adequate amounts of sunshine to maintain sufficient levels of vitamin D, and supplements of vitamin B12 in case of complete avoidance of animal products.

to this talk resonated with everything I have been thinking for the last few years. You could sum it up as MS – which is more important – inflammation or degeneration? This argument has been recently explored in the article

This article weighs heavily on the side of looking at the importance of degeneration, so doesn’t really discuss the benefits of early aggressive treatment of inflammation.

Giovannonni’s blog calls this article ‘myopic ramblings’ ; it’s a dog-eat-dog world out there in academia, but Peter Stys has received funding from the MS Society of Canada to research progressive MS, which has got to be good news.

To illustrate what this discussion is about, I’ve done a rough diagram based on one by Professors Coles & Compston Lancet. 2002;359:1221-1231

Basically, the tall skyscrapers represent inflammation – relapses or new symptoms. They are the part of MS that pretty much all the research and medications for MS have always been aimed at; that’s why research trials always only want to recruit people with relapsing –remitting MS.

But the disappointment over the last few years has been realising that although the disease modifying MS drugs can show a reduction in relapses, they have not been able to prove a reduction in the progression of MS.

The progressive element of MS is represented by the green block, and represents damage to and loss of axons, the long part of the neurons, or nerve cells.

The argument that Giovannonni presented, which is being mirrored by various thinkers around the world at present, is that perhaps research/pharmaceuticals have been focussing on the wrong part of MS. Perhaps the periods of inflammation in MS are the body’s reaction to a degenerative process that is going on.

As in this article, Giovanonni described his team’s interest in HERVs ( human entero-retrograde viruses – virus which are within the genes) and other virus which we can contract later in life; in particular, the Epstein Barr virus which causes glandular fever, and is part of the Herpes virus family. They want to see whether by suppressing these viruses, the driving force of the degenerative process might be taken out, and they have just received funding to do the preliminary research with anti-virals, which is great news.

It made me think again about looking into powerful natural anit-virals, and I’m going to speak to all the people who tried using some last spring to hear about experiences and see how they’ve been doing since.

Another big factor in his research is Vitamin D; for a long time he has been an advocate of high dose vitamin D3 supplementation. I’ve got previous posts about this so won’t go into the pro side of vitamin D, BUT…

The professor warned us that this would be a challenging session, and it was. This is really important, as high dose vitamin D has become a mainstay of treatment for anyone who’s had their ear to the ground in the last few years, and neurologists have started to also take it seriously and recommend it.

She introduced us to all the formative research on vitamin D and MS; the Nurse’s study, which is scientifically important and excellent due to the enormous size of the sample – 92,253 women followed from 1980 to 2000) and Nurses’ Health Study II (NHS II; 95,310 women followed from 1991 to 2001. This study showed that having higher vitamin D blood levels, and taking supplements containing vitamin D had a strong effect of protecting a person from developing MS.

The US army study; likewise, great numbers and scope of years, showing 7 million army recruits from 1992-2004 and compared the vitamin D levels with their risk of developing MS.18 They found 257 new cases of MS in the group. There was a significant decrease in risk with increasing vitamin D levels among white, but not black or Hispanic people, who had lower vitamin D levels than whites. Levels of around 100nmol/L or more seemed to be protective, with almost a two thirds reduction in risk for those with these higher levels.

A good factsheet summarising research on vitamin D and MS is on the MS Trust website at http://www.mstrust.org.uk/downloads/vitamind.pdf

She then gave feedback on 4 or 5 more recent studies, where vitamin D supplementation ( mostly D3 but one study used D2) was given at various doses, over various timescales, none of which showed any influence on annual relapse rate, or level of disability at all.

We then went on to discuss what to make of this?

One point was that an association is not necessarily a cause

For example, low levels of vitamin D in the blood are associated with relapses in MS – but maybe they do not go towards causing it – maybe the low level of vitamin D is caused by the relapse or inflammation?

One point was that it may not be possible to extract the active ingredient – whatever that is – from the foods in order to make an effective supplement, and that sometimes other helpful substances in foods are responsible for the absorption of a nutrient.

I asked whether there was a difference between getting your vitamin D from the action of sunlight on the skin and a supplement? I didn’t get the full answer I was looking for, but Prof Young did make the point that there are other actions that the sun has on the immune system and inflammation that are generally beneficial.

People wanted to know what we should advise ‘while the scientists work it out’. Prof Young’s advice was that she felt that 1000IU should be the top recommendation a healthcare professional makes to a person with MS, and that it chould be checked that the person doesn’t have any kidney problems, as if they do, high dose vit D could cause kidney stones.

I’m going to ask Giovannonni on his blog/twitter/whatever what his response to this is, and also check what George Jelinek has been making of it.

I think if I have any thoughts on this so far, they are that perhaps people with MS need to try to get a s much Vit D as possible from foods and from the action of sunlight on the skin. In this country that only works between April and October, and when the sun is high in the sky.

It makes me wonder about sunbeds, I haven’t gone right into this, but just asking around, apparently you can get vitamin d from using a sunbed, but it has to put out UVB rays.

( and obviously, use sensibly, don’t get burned or overdo it)

I think I’m probably going to carry on recommending 5000IU, due to all the other research I’ve seen, but will be keeping my ear to the ground.

I’ve got more from the conference and will post as soon as I get time to write it up!

We also had a great time at the gala dinner fancy dress night, so In the meantime, this is for the Bedfordshire people – if you ever wondered whether your MS nurses were arch rivals or accomplices in crime, here’s something to confuse you further….!

The Therapy Centre is going to stock the supplements that I recommend most, at a discount of 15% off the RRP (which is fantastic news). So soon you will be able to buy Vitamin D3 5000 IUs, cold pressed flax seed oil 1000mg (Omega 3), and 2 varieties of an iron-free multi vitamin, mineral and nutrient supplement made from whole foods. I got mixed up with a discount code previously, so if anyone used it and didn’t get the 20% discount, massive apologies, it went direct to the Centre, if you want to claim it back, see me!

Food

For people who’re eating food without saturated fat, but struggling with what to eat, I found a great website, www.fatfreevegan.com. Also, the OMS site is collecting more recipes that you can see when you log in. I too am collecting recipes, tips and ideas, so anyone out who has some good ones, please email or bring them in!

Hot topics

A hot topic for me this past year has been Epstein Barr (glandular fever) virus and herpes virus (mainly herpes, cold sores and shingles in adults). Since I started asking people if they had these viruses, I’ve been shocked at how many MS people have one of these. Recent research showing Epstein Barr still alive in MS lesions at post mortem, and discussion around the fact that the virus lives on and may drive inflammatory processes, got me wondering whether there could be a natural or herbal way of killing off the virus, and whether this would have any effect on the MS. So watch this space for the results of this latest quest – natural viral detox!

Got a great tip the other day – did you know that the Kindle (£150 version) can read your books to you? And for some people with vision problems, the iPad is a revelation, so keep your eye on how technology can make life easier!

*******************

December 2011

As an MS Nurse, I’m always looking for the best advice to give to my clients about being and stayingwell….. MS is a disease with a genetic component, but our environment – the food we eat, the climate, exposure to various viruses, and stress, – have an impact on activating or suppressing our genetic susceptibilities. I often talk with people about their lifestyle and diet, and depending on what I find out, I may recommend that they look at the work of Terry Wahls, Ashton Embrey, Ann Boroch or Sawyer & Bachrach , or get an overview and understanding of the different considerations and approaches by reading Judy Graham’s book.

But at the moment, if I had to choose just one piece of advice to give to people with MS who want to know what they can do to help their health, it would be to go to the http://www.overcomingms.org/website, and immerse themselves in the evidence based information there.

George Jelinek is the author of the book and website ‘OvercomingMS’ . He is a medical doctor, and professor of emergency medicine in Australia, whose mother had MS and became very disabled, and who was diagnosed himself in 1999. Since that time, he invested a vast amount of time and energy into examining the research on the various dietary, nutritional and lifestyle factors that have a documented effect on MS, found evidence of the profound difference they can make, put the recommendations into practice and stayed symptom and relapse free, and has put this together into a simple to follow approach.

The work that Professor Jelinek has done in compiling and explaining, in simple language, the research on dietary fats and vitamin D is incredibly helpful, and the fact that it’s all in one place, on the web or in his book,

Overcoming MS, an Evidence Based Guide to Recovery’ means that the information stays cohesive and doesn’t become overwhelming

The cornerstones of the OMS approach are:

Diet and supplements

· Omega-3 fatty acid: 20g /mls a day of flaxseed oil or fish oil, or the equivalent amount of fish

· Optional B group vitamins or B12 supplement if needed

Meditation – 30 minutes daily

Vitamin D

Sunlight 15 minutes daily 3-5 times a week as close to all over as practical

Aim to keep blood level of vitamin D high, that is between150-225nmol/L (may require up to 10 000IU daily)

Exercise – 20-30 minutes around 5 times a week preferably outdoors

Medication

· In consultation with your doctor, if a wait and see approach is not

appropriate, take one of the disease-modifying drugs (many may not need

a drug, and drug selection should be carefully weighed against side effects)

· Steroids for any acute relapse that is distressing

· One of the more potent drugs if the disease is rapidly progressive

The down side to the evidence-based approach, is that if anything – be it a therapy, foodstuff, supplement, drug, or approach, has not been researched, or not researched to an adequate standard, then it can’t be counted. The evidence based approach prevents us from wasting money or time on useless therapies, but as Carl Sagan, famous America

astronomer, writer and scientist, famously said, ‘absence of evidence is not evidence of absence’. So I’m still happy to suggest a person, for example, who has extreme fatigue, might try Terry Wahl’s green smoothies, or that someone might try hyperbaric oxygen, or even some of the commonly used symptom management drugs ( for instance for muscle spasm and stiffness) which don’t necessarily have a body of scientific evidence for effectiveness behind them, but are used due to the effects that people report.

Recently I was really excited to see a research paper from the Australian Journal ‘Quality in Primary Care’, following up people who attended an OMS retreat and took on the recommended dietary and lifestyle changes. This study showed ‘ongoing improvements in health related quality of life after an intensive lifestyle modification course’, over 2 ½ years, that ‘ could potentially make a significant difference to the lives of many people with this condition’, and ‘contribute to the growing body of evidence that health promotion programmes and non-drug therapies for MS patients have a beneficial effect.’

We hope to get Professor Jelinek over to the UK for a retreat in summer 2013, but you don’t need to do a retreat to take on this approach –all the research and recommendations are outlined on the website and in his book. Recently I met up with Lisa, the moderator from the website, and two English women who have done the OMS retreat, follow its recommendations, and enjoy good health, and introduced them to the MS Trust. Now they are going to be introducing the work to the MS specialist practitioners at the annual MS Trust conference for healthcare professionals in November. The goal of this is to help to promote the work of OMS in the UK – so that everyone who gets diagnosed with MS has the chance to find out about it, research it for themselves, and make their own decision.

************************

spring 2011

This month I am mainly focussing on Urinary tract Infections (UTIs), because they can really set you back when you have MS, and Prevention is better than cure!One cause of UTIs with MS is the bladder not emptying properly. Not being able to start passing urine, feeling there’s some left afterwards, passing a fair amount again quite soon after, ‘urgency’ and UTIs can all be signs of incomplete emptying. This needs to be identified by ultrasound scan, which is done during an assessment by the continence service. For Bedfordshire, Melanie runs a clinic here once a month, or for Beds and Northants you can be seen in a local clinic , or have a home visit. Speak to me, a nurse or your GP to be referred

Be prepared! Burning, cloudiness or unusual smelling urine are classic signs of a UTI, but you can also dipstick test your urine at home. Buy Multistix or Uristix which include Leukocytes and nitrites,.Also dipstick if you have a relapse, as UTIs can be symptom free. It’s a good idea to help your GP understand how a UTI can cause MS to flare up, and be ready to prescribe an antibiotic at the first sign of infection. Get a sample taken in too, and the antibiotic can be changed lagter if necessary.

If you use a catheter, either a permanent or intermittent type, this also can introduce a route for infection. Obviously scrupulous hygiene is a must. People who get recurrent infections can try having antibiotics for the three days around a catheter change, or may even need to use a daily low dose antibiotic. For intermittent catheters, the type can make a difference – it’s important to use something that you don’t have to touch the tip of at all, and there are a couple out now which have a protective ‘introducer’( Hollister ‘Vapro’ is one), so the tip does not even touch the outer part of the urethra. Talk to your continence adviser.

if you get a UTI.

Don’t take any chances – Get a prescription of antibiotics! If you take a course, top up with probiotics during and afterwards to help protect your digestion and health. Always finish a prescribed course of antibiotics, as stopping early can cause antibiotic resistant bugs.

Drink plenty of water and pee frequently. Begin as soon as you feel the first signs and symptoms. Doing this can actually flush the bacteria out and wash it away. Avoid alcohol, caffeine, fizzy drinks, spicy foods, and bubble baths etc, which can worsen symptoms. Cut out sugar to help your immune system fight back.

The most common bug causing UTIs is E coli, which lives in the bowel, but can cause persistent problems once it enters the urinary tract. So – what else can you do to help get rid of RECURRENT UTIs, especially if antibiotics are not working?

“Citricidal’ from Higher Nature is a safe, natural antibiotic you can try at home.

Cranberry helps to acidify urine, and may help stop the bacteria form sticking to the bladder walls. Concentrated tablet form is best.

Some people have found D-Mannose to be effective in the same way – this is a simple sugar that E coli tends to latch on to. It’s available online but is quite expensive.

All these remedies can be taken both in a higher dose for infection, and at a low dose as a preventative.

Be aware:

· Some sexually transmitted diseases have symptoms similar to urinary tract infections. See a doctor if you suspect that you may have an STD.

· See a doctor if you have a fever, chills, pain in the flank area, nausea or vomiting – especially if the symptoms develop rapidly. Also see a doctor if symptoms do not improve after 24 hours of self-care, or if you are unable to urinate at all.

*********************

December 2010

I hope everyone is reading the MS Resource Centre’s New Pathways (available to read at the MS Centre) at this exciting time in the world of MS treatments. The July/August edition updates us on the CCSVI debate, and lists all the places worldwide where you can be screened and treated. To learn more, I am attending the first International conference on CSSVI in Glasgow, in October, so I’ll be sure to report back.

The same New Pathways reports on a couple of fascinating small studies which fit in with this theory of poor circulation from the brain, and have worked for most of the people on the trial.

Inclined Bed Therapy

This involves raising the head of your bed by 6 inches. It’s certainly a lot cheaper than a private operation in Poland, as bed raisers, risers, or ‘elephant feet’ can be bought online for 12.99. Since CSSVI hit the headlines, this research has attracted fresh attention, and the author is carrying out a larger survey. You can get involved by going to www.thisisms.com/ftopicp-118378.html#118378

Update on Vitamin D

Thank you to the lady who came to let me know that she’s been feeling much better since she started on it. It is always good to get feedback; good or bad! D3 is still coming up as good, but newest research suggests it’s not just the vitamin D component that’s so important, it’s also the ultraviolet light, so more reasons to get outside as much as possible. Had a good question regarding the vitamin D Should you take CALCIUM with it? I discussed this with the technical advisers at Nutri, who supply quality supplements to practitioners. Their view was YES, if you are on a dairy free diet, but not if not. Also, if you quote MSRC New Pathways when you make an order on the phone at NutriCentre, you get 20% off.

My little break from clinic afforded me some reading time, and I’ve just finished ‘Healing Multiple Sclerosis’ by Ann Boroch. I’d recommend this to anyone who has taken lots of antibiotics in their life before having MS, or has had recurrent yeast or fungal infections (like thrush or athlete’s foot) It’s main drive is about the association between chronic candida and MS; this isn’t a new theory, and most natural health practitioners understand all about it. Getting rid of candida overgrowth is a long slog, but worth it if it applies to you, and I’m also happy to help anyone with this 3 pronged attack – kill yeast, don’t feed yeast, put good bacteria back! The author’s attitude to illness is a bit over the top at times, but the candida bit is good.

MS Centre Dietitian Bernice Chiswell adds

‘However, it should be born in mind that there is no scientific evidence behind this. The diet is very restrictive and for the majority could prove more harmful than beneficial due to inadequate macro and micro nutrient intake’

Me: The next book was ‘The MS Recovery diet’ The theory behind this is that food intolerances can initiate inflammatory reactions in the body, and it makes excellent and logical reading. It’s a similar approach to the Best Bet diet, but assumes that your intolerances are likely to be individual, explains how to find out, and has a large recipe selection to help get started. I recommend this to anyone with MS in the family.

Bernice Chiswell adds;

‘It should be born in mind that, although people with MS can have food intolerances, the only sure way to test for this is by food exclusion and re introduction. Again, unnecessary exclusion can lead to unbalanced diets, plus be an added life burden to people who are already coping with disability and fatigue. The best bet diet is again not evidenced base.’

Me: It’s a great month for books, too, as 3 new publications are out which all deserve reading – I have been waiting for ages for 2 of them:

Terry Wahls’ ‘Minding my mitochondria – How I Overcame Secondary Progressive MS and Got Out of my Wheelchair’, which promises to be very scientific and convince everyone to eat loads of greens; ‘Overcoming Multiple Sclerosis; An Evidenced Guide To Recovery’ by George Jelinek. Check out his approach on his website of the same name. Basically, super low fat Swank diet, a disease modifying drug and meditation, and Judy Graham’s ‘Managing Multiple Sclerosis Naturally’. I haven’t read these yet but I will be doing and will report back!

Dietary approaches vary a bit, but some things remain constant – the less saturated fat, and the more brightly coloured veg & omega 3 fatty acids you eat, the more good you’ll be doing yourself.